I'm very sorry you're going through this. I hope your SSDI comes through soon.

My son hurt his back at work, and after surgery for the herniated disk, he found out he had degenerative disk disease along with arthritis in his spine. He had a second surgery to no avail so he's hoping to get a spinal cord stimulator. I really worry about the impact the pain has on him.

I have myofascial pain which goes hand-in-hand with fibro. I was misdiagnosed with fibro because of the myofascial pain, but I ended up having adrenal problems that present the same as the crazy symptoms seem in fibro. Fortunately, with the myofascial pain, I've been able to control it using trigger point massage. In case you aren't familiar with myofascial pain, it's where the muscles get knots in them that refer pain elsewhere. It would be like if your big toe, shin, or any other place hurts other than the 18 tender points. If you're interested in knowing more, check out triggerpoints.net for trigger point and referred pain diagrams. The Xs are the trigger points where the knot in the muscle is, and the shaded area is where the pain is felt. Another great resource for myofascial pain is triggerpointbook.com.

While my pain is basically under control about 80% of the time, I'm noticing that the triggerpoints in my back are freezing up more and more so I too, walk like a 90 year-old woman!! I was at my naturopath's today going over my health issues, and he asked all about it, but didn't offer me any advice.

Don't feel bad about missing your granddaughter's birthday. My grandson is 19 months old, and I've seen him for a total of 2 hours as we live 700 miles away, and the adrenal issues cause untold insomnia so travel is almost out of the question. We did go over this summer, but came right home as I couldn't sleep. Hopefully next summer will be better.

As far a finding others with the tarlov cysts to talk to, you might try finding a bigger chronic pain forum. I know of one, but don't know if I can post the name of it. If you're interested, PM and I'll give you a link.